Discussion on WPI facebook of a NEI center in New jersey???

It is kind of upsetting could someone tell me if this is true. They say Mike Dessin and Cort are in this together lobbying. It will bring all the Cfs people down with them???
I just want to know what is going on?

I am just trying to figure out what is going on with all this talk on the facebook site? I am not saying anything is true! So perhaps you could express yourself a little more nicely!
Your statement was rude.

Yeah. I don't know the whole history by any means, but it seems like in the wonderful world of the internets, petty disagreements become World War III. Everything is Manichean. Cort occasionally thinks Suzanne Vernon is not actually the devil incarnate, so he's got to be evil, and thus anything associated with him must be too. Dr. Bell and Dr. Klimas are on a board with Mike Dessin and that means they are tainted? Dr. Bell and Dr. Klimas aren't looking out for the true needs of CFS patients? There's some crazy conspiracy theory going on about a nefarious money-making scheme with Cort, Mike Dessin, and Emperor Palpatine. We don't want MORE CFS research centers because they might "compete" with the WPI? A few people think it's a brilliant idea to use the FB page of a scientific organization as the homebase for conspiracy theories and smearing other patients--the very people the WPI is dedicated to helping. It's putting the people who run the WPI site in a terrible position.

There's a big statement posted from Marly Silverman. Read it.

Now, the NEI might in fact be the secret lair of Dr. Evil. I don't know. But this discussion is rooted in something else. And it's ugly.

Reading through it just seems like ramblings of overtly suspicious people paranoid about conspiracies!?!
Reallyyyy not helping the, "cfs/me does not have a psychiatric/personality disorder origin" chaps.

Though I can see the disdain at the advocation of homeopathy. Pure psuedoscience. Just wish people would express their views in a less 'conspirational' way, doesn't help get their points across.

What I do know is that even though the "powers" that be behind the scenes here at Phoenix Rising probably find me a royal pain at times, and we do not often see eye to eye, Cort always treats me with respect and has never prevented me from speaking my mind. That's all I need.

I just posted a blog on the NEI Center in New Jersey. Its a great project! To show how political these things get - the center was originally going to involve Lyme disease as well and Marly got the support of an international Lyme organization but when a Lyme organization based in New Jersey found out about it they hit the roof and sabotaged the project because Lyme Disease is a real disease and chronic fatigue syndrome is not. They couldn't bear to be associated with us. So they got their political contacts to stop the project just as it was about to be voted on. They also went after one of the principals of the project at the University he works at. Now he has had to back way off because the university is upset. They've also spread rumors that the project was going to have a psychiatric slant. Its really ugly stuff.

This other guy has become a problem. He's basically attacking anyone Mike Dessin and I are associated with. He says there's an FBI investigation (or something) into Mike's doctor (???). He's really out there. It appears to be based on a hate of alternative medicine and a desire to show that its all a fraud. No one knows who he is.

Reading through it just seems like ramblings of overtly suspicious people paranoid about conspiracies!?!
Reallyyyy not helping the, "cfs/me does not have a psychiatric/personality disorder origin" chaps.

Though I can see the disdain at the advocation of homeopathy. Pure psuedoscience. Just wish people would express their views in a less 'conspirational' way, doesn't help get their points across.

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With all due respect Elliot, Andrea Whittemore-Goad was helped considerably by homeopathy. It helped her so much that she felt she was well enough to go to college, but relapsed after a series of vaccinations.

I googled NEI Center of N.J. and got the Lyme Disease Insights Blog and read the statement by P.A.N.D.O.R.A (I'm a bit embarrasssed to admit I know little of that organization yet). I really tried to understand what the controversy was, but I am having a difficult time comprehending tonight. I haven't gone to WPI's F.B.

I'm not knowledgable enough about Lyme...and I have a lot of catching up to do! Can anyone enlighten me regarding this NEI center...isn't it a positive thing? Yes? No?

(I also starting reading about NEID to educate myself as best I could....but it's slow going!)

From what I've read so far, Mike Dessin is on the Board of Directors and Dr. Bell and Dr. Klimas are members of the Medical and Scientific Advisory Board.

From the Mission Statement...it sounds good....

MISSION STATEMENT

The NeuroEndocrineImmune (NEI) Center™ is a community, patient-driven grass roots project of P.A.N.D.O.R.A. in partnership with the Lanford Foundation–Lifelyme, Inc. It will be the first research center to incorporate biomedical engineering, scientific, and clinical research and integrate patient computer-aided disease diagnosis and treatment (CADDT), which was specifically designed for multisystem illnesses and complex diseases. Guided by medical scientists and clinical researchers, with pertinent social services, the center staff will enhance the quality of life for millions of patients worldwide. The Center and its satellite locations will strive to facilitate cooperative and authoritative educational resources in clinical research, medical ethics, accountability, and patient/caregiver education, with the goal of providing new, integrated treatment programs for complex chronic illnesses.

The cornerstone of the NEI Center™ is that discoveries and advances made in any one of the neuroendocrineimmune illnesses: chronic fatigue syndrome (CFS), myalgic encephalomyelitis or encephalopathy (ME), fibromyalgia (FM), Gulf War syndrome/illness (GWS/GWI), multiple chemical sensitivity (MCS), environmental illness (EI), chronic or persistent Lyme disease (CLD-PLD), Alzheimer’s Disease (AD), and autism, will be applicable and beneficial to other neuroendocrineimmune illnesses, thereby bringing us closer to a cure.

For any other thickos like me :ashamed: .... as googling CAA is a nightmare! It stands for
CFIDs Association of America. I knew that really! :innocent1:

Anyway, this all seems way too complicated for my brain right now. My only thought is that I truly hope some good comes out of this discussion and not just further disagreement and the builiding of resentment between patient advocates. I have faith that deep down we all want the same thing regards ME/CFS and whatever our personal differences I hope this will bring us together, I think we can all agree we need to be as united as possible as we're fighting a difficult fight here.

I look forward to learning more about all these people and agencies (when I'm not so fogged!) and to a well thought out and varied discussion about it here on PR, that is after all why were all here to exchange ideas, hopes, fears etc. and in the process support each other &move our cause forward.

I just posted a blog on the NEI Center in New Jersey. Its a great project! To show how political these things get - the center was originally going to involve Lyme disease as well and Marly got the support of an international Lyme organization but when a Lyme organization based in New Jersey found out about it they hit the roof and sabotaged the project because Lyme Disease is a real disease and chronic fatigue syndrome is not. They couldn't bear to be associated with us. So they got their political contacts to stop the project just as it was about to be voted on. They also went after one of the principals of the project at the University he works at. Now he has had to back way off because the university is upset. They've also spread rumors that the project was going to have a psychiatric slant. Its really ugly stuff.
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Wow. just WOW. that is the most idiotic political move I have ever heard. Insulting. You know, I always quietly think to myself how much more could be accomplished if advocates and people with all of these misunderstood disrespected diseases stood before their government and their medical system as one and advocated as one. I have always really admired and supported the work of PANDORA as a result. It's especially a shame that a national organization was all for it and a state organization had to step up and throw every wrench they could find. This is just sad. I mean, do they not realize that the classic political manouver of trying to disassociate yourself with people who are doing the same thing or want the same thing that you do ( but you find yourself to be "better" or "different" for some reason or another) nearly ALWAYS backfires in the end and everyone gets nothing. No one takes chronic lyme seriously, no one takes CFS seriously, so rather than do something about it they'd rather sit and debate the minuteae of who is more "real" "deserving" "legitimate" etc. And still no one is going to take them seriously anyway. So we all lose. And it's downright idiotic that that is what is interfering with the very noble career of the above mentioned professor. (good to know what really happened there, Cort, Thanks for that)

Makes me even madder cause I am close enough that I could viably go there. What selfish, counterproductive idiots.

Yes, the mission statement previously posted in regard to the NEI center is a very good synopsis of our vision. In no way does the NEI center want to compete with centers such as WPI but rather work along side institutions who share the same common goals, which ultimately means finding and implementing effective treatments for patients with NeuroEndocrineImmune illness.

Its unfortunate there are anonymous bloggers who cowardly spread half-truths and outrageous lies about other patient advocates in our ME/CFS community, as Marly pointed out.

At this point the NEI center is really just a piece of paper and a vision, that will be moving through the senate soon.

I ask everyone to please be as supportive as you can in helping establish the NEI center in NJ and its satellite affiliates.

and what I'd be curious to hear from the "CFS"/ ME people who are trying to badmouth this is- do you really want there to be only one research/treatment center in the ENTIRE country for your diease? really? seriously? you think that is a good thing? Maybe that's all well and good if you live on the west coast, but there is no way I could ever get on a plane in the state that I am in, a lot of people are in the same boat, and there is NO WAY that every single patient in the country (let's see like 1.5 million people maybe) are ever going to be helped or even seen by a single medical facility. I just don't understand why so many people seem willing on so many issues to do everything they can to self-destruct.

I'm sorry I've been trying to take a rest from a lot of the advocacy stuff because I've got a lot going on personally, but this seriously just bothers me. I'm not that far away, if I can get some details and a ride I'd gladly testify before the NJ senate. I hope the point can be made to them how economically beneficial this could be for the state of NJ to have people from neighboring states traveling there for treatment.